Framing Ethical Standards for Consumer Data Use in Health Care

How do we balance the desire of organizations to harness big data's power with the need to prevent potential harm to individuals or populations? For health care, MITRE developed a framework to promote the ethical use of consumer-generated lifestyle data.

Every day, we generate information that can be used to make decisions about our health—how many steps we take, what we search for on the internet, the mobile apps we use, and what we buy. Health organizations are harnessing this lifestyle data, called consumer-generated data (CGD), to forecast health outcomes, risks, and health services utilization, as well as to build a more personalized experience.

CGD comes from varied sources, such as social media, internet searches, buying behaviors, and membership data. CGD use is in its infancy; however, many organizations are starting out with the assumption that it will have positive impact on individuals and populations.

On the other hand, without ethical principles and standards for its use, this data could actually harm patient privacy and autonomy, disrupt the patient-provider relationship, or cause other negative impacts.

“As consumers, we are largely unaware that organizations are using CGD in the context of our health," explains Dr. Eldesia Granger, the principal investigator leading a MITRE team researching this challenge.

"For example, we might not realize what we are agreeing to when we sign up for a store loyalty card or sign user agreements for mobile apps or wearables. Also, there are many unknowns regarding the use of this data, such as what structural factors—including institutions, systems, and societal policies—influence the consumer lifestyles reflected in the data.”

It includes five non-hierarchical values, eight principles to protect the values, and 39 user-specific, actionable guidelines to reinforce the values and principles, including questions and considerations to support decision-making.

“An ethical framework will promote transparency in decision making regarding CGD,” says Susan Mbawuike, a research team member. “It can also help organizations use CGD in a more critical and objective manner to safeguard patients from negative impact.”

To develop the Ethical Framework, the team—in collaboration with an ethicist at the University of Maryland—first conducted literature reviews and comparative analyses of existing ethical frameworks addressing health or technology. They wanted to know: Was there a consensus on ethical considerations and constraints that should apply or what values, principles, and guidelines should be associated with the use of CGD in health care?

Next, the team held workshops and conducted key information interviews with MITRE subject matter experts from a variety of disciplines (e.g., ethics, data science, health care privacy, policy, law, and health communication science). In these meetings, the researchers solicited feedback on a preliminary set of values, principles, and guidelines, which the team then refined accordingly.

The MITRE team also conducted interviews with external health care experts, including providers, patient advocates, payers, privacy scholars, and bioethicists, to obtain information about their experiences with CGD use in health care, their perceptions of the Ethical Framework’s values, principles, guidelines, and the overall effectiveness of the Framework in practice.

“Our goal was to enable decision makers to more thoughtfully consider the implications and/or consequences of using CGD in health care before integrating CGD into population management strategies,” adds Dr. Jessica Skopac, the project's co-principal investigator.

“Our applied, practical guide is now ready to share broadly with interested organizations," Granger adds. "We hope the Ethical Framework will inform the national discourse on the use of CGD in health care. And we encourage all stakeholders to review it and provide us with feedback.”

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